Abstract: AccessLabs are workshops with two simultaneous motivations, achieved through direct citizen-scientist pairings: (1) to decentralise research skills so that a broader range of people are able to access/use scientific research, and (2) to expose science researchers to the difficulties of using their research as an outsider, creating new open access advocates. Five trial AccessLabs have taken place for policy makers, media/journalists, marine sector participants, community groups, and artists. The act of pairing science academics with local community members helps build understanding and trust between groups at a time when this relationship appears to be under increasing threat from different political and economic currents in society. Here, we outline the workshop motivations, format, and evaluation, with the aim that others can build on the methods developed.
” “For research to be really impactful, the public has to be involved. They need to understand the research and we need to help to connect the research to what people care about,” says Imran Khan, Head of Public Engagement at Wellcome Trust in the UK, one of the world’s largest research funders. But do the public wish to be involved in science? The German and Swedish Science Barometers, the EU-project ORION Open Science European public attitudes survey and the Wellcome Trust Global Monitor have all asked this question….
After the presentations, the participants discussed in smaller groups why and how the public should be involved in science. They then shared their thoughts both orally and by using an online tool. According to the workshop participants, the public should be involved in science because:
- Science will have an impact on their lives.
- We need the views of the public.
- Knowledge gives insights and increases trust. It’s a base for democracy.
- It can improve quality and broaden perspectives.
- They pay for it!
But how can we interest the public to get involved? Some suggestions from the participants in the workshop included:
- Must depart from their own interest and relevance.
- The wow effect – science is fun!
- Create arenas for connection between researchers and the public.
- Show how research affects society and how you can contribute.
- Make participating fun and giving….”
Abstract: Crowdsourcing shifts medical research from a closed environment to an open collaboration between the public and researchers. We define crowdsourcing as an approach to problem solving which involves an organization having a large group attempt to solve a problem or part of a problem, then sharing solutions. Crowdsourcing allows large groups of individuals to participate in medical research through innovation challenges, hackathons, and related activities. The purpose of this literature review is to examine the definition, concepts, and applications of crowdsourcing in medicine. This multi-disciplinary review defines crowdsourcing for medicine, identifies conceptual antecedents (collective intelligence and open source models), and explores implications of the approach. Several critiques of crowdsourcing are also examined. Although several crowdsourcing definitions exist, there are two essential elements: (1) having a large group of individuals, including those with skills and those without skills, propose potential solutions; (2) sharing solutions through implementation or open access materials. The public can be a central force in contributing to formative, pre-clinical, and clinical research. A growing evidence base suggests that crowdsourcing in medicine can result in high-quality outcomes, broad community engagement, and more open science.
“GenR has made a conscious choice to use Community Science over the more common term Citizen Science as its umbrella term for the participation of the wider public in scholarship. The primary reason for this choice is the understanding that it is an unintended category error to denote citizenship as a prerequisite for participation in scholarship and instead being a person would be enough to take part — citizen or not.
Ligue des Bibliothèques Européennes de Recherche – Association of European Research Libraries (LIBER) include Citizen Science (Haklay 2018) as one of the seven focus areas for its Open Science Roadmap which shows the importance of the field for research, institutions, and policy….”
“Take the most rigorous study possible – a large double blind clinical trial. It can cost tens of millions of dollars to conduct such a trial, and (depending on what assessment is being conducted) take years of bureaucratic wrangling to complete.
This creates (some would argue by design) a “monopoly of proof,” leaving billion dollar companies among the few who can (quite literally) afford to prove their products work.
So how does a new wellness product company provide solid evidence that their products are the real deal?…
Every purchaser of Qualia Mind or Qualia Focus gets free access to the assessment tools from Cambridge Brain Sciences used in the pilot study so consumers can test their personal mental performance before and after use to see if the products work for them….”
Abstract: The purpose of this article is to examine the conceptual alignment between the ethical principles of research integrity and open science. Research integrity is represented in this study by four general codes of conduct on responsible conduct of research (RCR), three of them international in scope, and one national. A representative list of ethical principles associated with open science is compiled in order to create categories for assessing the content of the codes. According to the analysis, the current understanding of RCR is too focused on traditional publications and the so called FFP definition of research misconduct to fully support open science. The main gaps include recognising citizen science and societal outreach and supporting open collaboration both among the research community and beyond its traditional borders. Updates for both the content of CoCs as well as the processes of creating such guidelines are suggested.
“Background: Many aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This offers an unprecedented chance for fields of human subject research ranging from the social sciences to precision medicine. With this potential wealth of data come practical problems – such as how to merge data streams from various sources – as well as ethical problems – how can people responsibly share their personal information? Results: To address these problems we present Open Humans, a community-based platform that enables personal data collections across data streams, enables individuals to take control of their personal data, and enables academic research as well as patient-led projects. We showcase data streams that Open Humans combines – such as personal genetic data, wearable activity monitors, GPS location records and continuous glucose monitor data – along with use cases of how that data is used by various participants. Conclusions: Open Humans highlights how a community-centric ecosystem can be used to aggregate personal data from various sources as well as how these data can be ethically used by academic and citizen scientists.”
“It is therefore essential that we develop systems that can accurately emulate expert decisions, and that these systems are made openly available for the scientific community.
To demonstrate how citizen science and deep learning can be combined to amplify expertise in neuroimaging, we developed a citizen-science amplification and CNN procedure for the openly available Healthy Brain Network dataset…”
“Between the 25th and the 28th of July 2018, we co-created a very rich learning expedition organized by the Research Group on Collaborative Spaces (RGCS), at MIT and Harvard University, in Cambridge (MA). This alternative academic network focuses on topics about new work practices inspired by open science and citizen science cultures.”
“As organizations committed to the availability of information about our government and its transparency, we write to express our support for the Equal Access to Congressional Research Service Reports Act of 2016 (S. 2639), introduced last week. We extend our sincere gratitude for your many years of leadership in support of opening access to these valuable, taxpayer-funded reports. We are appreciative of your efforts, and those of Sen. Patrick Leahy, to make a bipartisan push for a more open government at a time when such work is particularly vital to our democracy.”